I was never really all that maternal but never envisaged not having my own children one day. At 35 I decided it was now or never as time was ticking, it never seemed to be the right time before that. I came off the pill and though “if it happens”. It did happen, 6 months later I was pregnant but miscarried at 10 wks, I had a D& C and was bereft. Although not obsessed, I was determined to get pregnant again and have a baby.

However, within 6 months my GP had referred me back to the hospitals Gynea unit for a scan due to severe pain I experienced during one period, on one occasion. I have had never experienced problems before, though periods were heavy, I was on the pill for a lot of years, I was diagnosed with chocolate cysts and stage 4 endo and had lap surgery June 2011 to remove them and the adhesions sticking my reproductive organs, bowel and bladder together. My gynea was confident that with surgery was I would improve my chances of fertility.

Following surgery my cycle was all over the place, I had tests at the GP surgery which est FSH was high, higher than a women of my age; I went on the “endo diet” lost weight and started acupuncture. My GP told me I would not get funding for IVF as I have a step-son. The following February I had a BFP, it was short lived. After just 6 weeks I had a heavy period and lost the pregnancy. I had another BFP in April, again this failed at 5 weeks.

In June last year I had another severe episode of pain and following a scan cysts were found again and had lap surgery as before in November. I haven’t had a pregnancy since. I have been to see the fertility clinic in my local hospital which showed low AMH (means my eggs are few and not very healthy). I have been referred to IVF clinic but think this is a waste of my time TBH.

A few months after my latest surgery I was bleeding from my back passage during my period and the pain is increasing month by month. Following endoscopy of the colon I have deep and penetrating endo of the bowel. I will need invasive surgery, possible bowel resection and short term stoma.

I have had to make a decision; my health or continuing to try for a baby. As I am now 38 (40 next yr!) I haven’t much time to play with. I cannot risk having to have further major bowel surgery in the future and risk having to have parts of the bowel removed, it just ain't worth it. So, my husband and I have decided I should now go on meds to stop my periods altogether as I can no longer cope with the pain, worry and possible long term affects this bitch of a disease is doing to my insides. I feel bereaved for something I have and never will have, its painful. I am coming to terms with it slowly, have stopped crying myself to sleep and waking up crying, stopped blaming myself but still feel a little bitter and sad. Hindsight is an infuriating thing, but if I had have know I would have had kids in my 20s.

Some consolation is that my step-son has children and I am called “grandma” but it’s not the same. I have not bore my own children, I cannot pass on my pearls of wisdom, I have no legacy to leave and the brilliant up-bringing I had from my parents I can’t pass down to my kids and will never feel or experience the immense love a parent must have for their children. It sounds self absorbent but I even think about dying alone on my death bed, who will be at my side? I hope my grand kids, but you never know. That gap in my life will never be filled, I will just have to work round it, but I will shoot anyone who tells me “it’s not the end of the world” why? Can’t you have kids either?

Don’t believe the gynea that says endo doesn’t affect fertility, it can and does and the longer you leave it the worse it gets and the chances of becoming a parent can disappear. If you cannot imagine your life without having your own children in it, don’t leave it too long.

I am trying to be positive about me and my husband’s future. We are saving to go and see my close cousin in New Zealand.

I hope that you all find the strength to mange your illness and cherish the people you love most. xx

8 Replies

Thank you fo this. It is difficult to know what to do sometimes, I am 22 and recently got married, my partner is 31 and we are discussing if we should go for it now rather than waiting, but it is hard to know what to do for the best.

I wish you all the best and hope the pain gets sorted for you, it really is a horrible illness to have.

Look at my post below, when I had my lap they were expecting a 5cm endometrioma and one blocked tube, 5 months later that cyst was 15cm and had depleted all my ovarian reserve on one side and started on the other. It's scary to think how bad things got, I had to fight to get my lap too even paying private at one point

You should see about getting an amh test and an afc count so at least you know where you stand. It was already nearly too late when I realised mine was desperately low

Gosh Lauren i just cannot believe the impact this illness has on womens lives and it still doesn't seem to be taken seriously by the medcal profession and the cynic in me thinks its because its a womans disease. There's just not enough research going on and the answer always seems to be surgery which can make it worse! I hope its a happy ending for you x

My god our lives seem so similar.I'm in that same place right now n u really do feel a huge sense of lost,deep in your heart over never being given a chance to have a child.its all the things u have mentioned n me to even felt selfish on thinking in my old age a will have no one? I was with my ex 18yrs n we was unsuccessful in having a baby,had 2 miscarriages,and its how he delt with that n my illness that made me realise he wasn't what I needed.I met my present partner 3 yrs ago n wish we had met yrs b4.he's everything I always dreamed of,he's so very special.he is older than me at 50,I'm 36,but he would of had more children with me because he new how much we would of been good parents.he has to grown up children n his ex wasn't worthy to be a mother,which really gets to me.he's going to be grandad next year n I say him n not us because I'm not quite there yet in missing out on being a mother n jumping straight to being a grandmother.its come at a difficult time for me but maybe it will turn out to be a blessing in disguise?all I know is that I'm lucky to be where I am now with a person that has been a long time coming n I'm going to make the most of what good things life brings my way.always believe life has a plan.I wish u well with everything that comes ur way n one day we will realise children wasn't the be all n end all in our lifes.good luck xxxx

This message made me cry, I am going through the same thing, 5 years ttc, extensive stage 4 on bladder, bowel, ureters, sacrial ligaments, pouch of Douglas, 2 blocked tube, everything stuck together and an afc count of 4 and amh of 3, and my fiancé has a daughter

It hurts so much doesn't it, I'm 29, never expected this, I had a lap last month and they found 5 endometriomas one being 15cm, I have another lap next month after 3 on prostap

Thank you so much for your post. You have really made me think. I am 22 and was diagnosed with endo at 18 iv been with my boyfriend 6 years he has been fantastic. We would love children I have always wanted a baby. But I'm always questioning when is the right time. I am in my final part of university currently due to qualify in November and have no job Im constantly thinking I need a job and then to try as we will have no money otherwise. I feel sad about your exaperience and feel its a real eye opener to me. Thank you for posting your story xxx

Eckythump, I feel your heartbreak, I was married for 20 years, I didn't get a diagnosis until I was 39 and had been trying for a baby for over 5 years! Stage 4 endo and no hope of conceiving plus my egg count was low and poor quality, unlikely even IVF would have worked!

It didn't sink in till my husband and I split up when I was 40 and he then went on to have a baby with a 23 year old! I tried to be brave and even sent an email wishing him every happiness, he sent one back telling me how great having a baby in the house was and how busy they keep you!! I ALMOST ENDED IT ALL!

Im 45 now and with a lovely man with 2 grown up children who are so lovely, but im not their mum, i'm no ones mum, its been a long road and I think as you do, what will happen to me, will anyone ever remember me??

I have joined a site called Gateway women for women childless by circumstance or choice, its been so good to realise that im not alone and that there is life without children, its just different from what I wanted or imagined.

Firstly though you need to deal with the grief, its real and it deserves to be worked through, grief comes at the most strangest times, I used to think, for gods sake get over it! but now I just accept and don't punish myself for feeling it, its normal.

Endo takes so much from us, to take our chance to be a mum is surely the cruellest! You are spot on, if I had the chance again I would have babies in my 20's before this awful disease got hold!!

Thank you all so much for your comments and support and Angela i will have a look at the group you mentioned. When you are younger you live life to the full and don't think to far into the future enjoying life day to day. There never is a right time to plan a family andespecially financially, so uif you are in a loving and stable relationship and you can give that to a child then why wait? Id give up my job tomorrow for the chance to be a mother! Thanks again for you're support and wish you all the luck for the future Xx